Oh how I wish I could push that magic button !
You know the one that makes you “normal”.
I don’t care if it makes you a rude, naughty boy who tests my patience.
I just hate watching you on nights like this, on weeks like this.
Nothing major has happened, you are not lying in a hospital bed, you haven’t yet got your feeding tube or splints for your legs.
As crap as they are going to be, as much as I am going to cry and pray to someone I am not sure I believe in at those times.
Times like now, the everyday I equally have no control over.
You have slept the equivalent of a nights sleep in the past 4 days. You body is weak, you are falling, a lot, because you are not strong enough to stand your tiny 14kg frame. You are so tired your seizures are frequent, eye rolling, crying, distressing episodes. You are too tired to chew, you are mildly aspirating. You are hungry but eating is too tiring. You are frustrated, you are pulling my hair, scratching my face as I try to help you sleep.
Your stims are worse than ever, you are black in the legs from constant banging, the back of your head sore from aggressive rubbing.
But you still glimmer a smile as I try not to cry in front of you. As I beg you to go to sleep in the hope you understand, which you don’t.
I hate this, why, how can I after nearly 7 years still be grieving ? How can I still not understand ?
Why does no one know how to help you ?
You deserve to be healthy, happy and in control of your future.